Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences

Abstract Background Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred.

insights into the challenges patients and their caregivers (caregivers are defined as people who provide informal support to a patient and do not need to be directly related to the patient [i.e., family member, friend, neighbour]) experience during this transition.

| Hospital-to-home transitions in PC
PC is an approach to care, often delivered by an interprofessional team, aimed at reducing symptom burden and addressing the physical, psychological, spiritual and emotional needs of patients with life-limiting illnesses. 1In Canada, PC is provided across settings: hospital-based services, including PC units, specialist consultation teams and outpatient clinics; and community services, including PC provided in patients' homes (private or residential care facilities), and residential hospices. 2 people with life-limiting illnesses approach end of life, many consider the possibility of receiving PC at home. 3 American and European studies have shown that approximately 50%-60% of patients experience a transition across care settings during the last 4 weeks of life. 4,5This current study considered transitions from hospital to home, retirement home or group home.][9][10][11][12] Few studies have focused on hospital-to-home transitions for patients receiving palliative-focused care.

| Shortcomings of existing interventions
4][15][16] This review found that most interventions involved a care coordinator, used hospital readmissions as the primary outcome and demonstrated reduced readmission rates. 11However, the review included studies at high risk of bias, most commonly due to insufficient length of follow-up or missing data. 118][19][20] Without patient and caregiver involvement, interventions may not capture the components they most value to improve outcomes.

| Codesign as a patient-and caregiver-centred approach
Research involving codesign processes has engaged diverse stakeholders in intervention development.Codesign can involve researchers, designers, clinicians, patients and caregivers, with patients and caregivers central in the process. 21By providing the opportunity for patients and caregivers to share lived experiences throughout concept development, codesigned interventions are more likely to respond successfully to their needs. 21Codesign has effectively been used for inpatient care studies with favourable results 22 and has been applied to various improvement initiatives, including transitions across care settings, home care and initiatives for older adults and patients receiving PC. [23][24][25][26][27] When patients and caregivers have been involved in participatory research, they reported a sense of being heard 24 and favourable change towards collaboration and ownership. 28Furthermore, the engagement of patients and caregivers has created opportunities to challenge long-standing concerns in medicine where the voices of healthcare providers (HCPs) take precedence over those with lived experience. 29None of the hospital-tohome interventions were developed using a codesign approach with patients and caregivers.We have applied the codesign approach to the PC space, which has not been done in the Canadian context.

| Objective
By leveraging the codesign approach, the objective was to undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]), informed by patients, caregivers and HCPs, that was tailored to the needs of the Canadian hospital-to-home transition process, while ensuring adaptability to local contexts.

| Setting
The setting was The Ottawa Hospital, a large tertiary academic hospital in Ottawa, Ontario, Canada.The study site had an interprofessional PC consultation team, including physicians, nurses and social workers.In 2022, the team found that 28% of the 3541 patients seen in consultation were discharged home.Among those discharged home, the mean time to death was 34 days.When a patient transitions from hospital to home, the PC team assists the attending team to coordinate care and facilitate the discharge.Discharges from this hospital were complex, and health utilization outcomes (e.g., readmissions, emergency department visits) suggested transitions were suboptimal.

| METHODS
The codesign process consisted of (1) development of codesign workshops, (2) codesign workshops and (3) low-fidelity prototype testing 10,13,14,[30][31][32][33] (see Figure 1 for an overview of the study).The study was reviewed by a research ethics board and granted exemption because it met the criteria of a quality improvement project.However, we incorporated ethical considerations into the The codesign process followed the Double Diamond Framework, developed by the Design Council UK in 2005 32,33 and revamped in 2018 as a graphical way to describe the steps in a design process. 312][33] See Figure 2 for a visual depiction of the design process and how our project stages map onto the framework.2][33] The third diverging phase (Develop-Ideation phase) generated ideas for potential interventions and explored how they could be tangible. 31The research team created sketches and storyboards of prototypes.The final fourth phase will involve another converging phase (Deliver-Implementation phase) and result in the delivery of the final ACEPATH intervention for implementation (more detail in Section 4.3).

| Stage 1: Development of codesign workshops
Journey mapping [35][36][37] was used to visualize the processes individuals experience as they transition from hospital to home.The aim was to clarify and communicate key findings from prior research 10,[13][14][15]30 and reflect on the emotions, needs and experiences of patients and caregivers as they navigate the hospital-to-home transition. Th journey mapping exercise helped develop key communication and research assets including materials and prompts for the codesign workshops.

| Recruitment
An email was sent to project coinvestigators and collaborators including HCPs and patient/caregiver advisors.
F I G U R E 1 Codesign process stages: development of codesign workshops, codesign workshops and low-fidelity prototype testing.

| Data collection
Journey maps could entail a list of steps, an instruction manual, a story or a voice recording, memo or dictation detailing the journey from hospital to home.Participants were asked to describe, in their own words, the patient journey from hospital to home, including the steps required to get home, when these steps happen, and HCPs or other stakeholders involved in the transition.Participants also described what could happen if a patient returns to the hospital after discharge home.

| Analysis of journey maps
The team used affinity mapping 34 to cluster journey maps into key moments during a patient's hospital-to-home transition that a codesigned intervention could address.The codesign workshop prompts elicited conversation on the challenges encountered at key moments in the transition journey and relevant solutions.

| Stage 2: Codesign workshops
In the codesign workshops, the research team spoke with patients, caregivers and HCPs to understand challenges, identify metrics for successful transitions (covered in a subsequent manuscript), and identify tangible actions that would improve the patient and caregiver transition experience.Based on findings from the codesign development phase, the team determined three objectives for the workshops: identification of the greatest challenges in the hospitalto-home transition, key patient/caregiver metrics for success in hospital-to-home transitions, and tangible actions that would improve the patient and caregiver transition experience.

| Recruitment
The PC team or other HCPs from the patient's circle of care approached patients (or their caregiver) who had received an inpatient PC consultation, had comfort-focused goals of care, and ][33] wanted to return home for PC.The HCP forwarded interested patients' and/or caregivers' contact information to the research coordinator (RC), who then provided patients and/or caregivers more information about the study.
The RC emailed site attending PC physicians weekly regarding recruiting potential participants.Additionally, the research team presented virtually to local and regional stakeholders regarding recruitment strategies, inclusion criteria and the process to contact the RC.
Potential patient and caregiver participants were screened by the RC to ensure they met the inclusion criteria: 1. Patients have experienced a hospital-to-home transition while receiving PC at the study site or have expressed a preference for receiving comfort-focused care at home postdischarge.
2. Patients have a Palliative Performance Scale between 30% and 50% (30% representing a bedbound patient). 38 Patients and caregivers can communicate in English or French and are above the age of 18.
We aimed to include a diverse representation of patients and caregivers in the workshops.However, due to low recruitment numbers, all eligible potential participants were accepted.To increase diversity, the research team contacted 16 organizations in the area serving equity-deserving groups, for example, those without English as a first language, with lower income and so forth.Three organizations shared the recruitment letter through their networks and one organization provided contact information for a potential participant.
Additionally, separate workshops were conducted with HCPs to share their experiences supporting diverse patients and caregivers in hospitals and/or the community (e.g., rural, low socioeconomic status and/or immigrant communities) to supplement the limited diversity of patient and caregiver participants.
Potential participants were screened by the RC to ensure they met the inclusion criteria: 1. HCPs are involved in the hospital-to-home transition for patients receiving PC at the study site and have identified that they support diverse patients and caregivers.
2. Participants can communicate in English or French and are above the age of 18.

| Data collection
Workshops were scheduled with patient and/or caregiver participants following discharge home.The RC obtained participants' home addresses to which they delivered four physical prompt cards, ensuring accessibility.Participants could write on the cards, make notes for the session and/or have materials available to prompt conversation during the workshop.
All workshops were 60-min and virtual (using Zoom).Patients and caregivers could participate independently or in a patient/ caregiver dyad.Workshops were audio-and video-recorded and transcribed, and an RC took notes during workshops.
Codesign workshop participants were given a demographics questionnaire via Microsoft Forms which collected age, preferred language of communication, location (urban or rural), gender, status as Indigenous or a visible minority and identification as a patient or caregiver.

| Codesign workshop materials
Prompt cards were designed to facilitate conversations on each of the four key questions: 1. Is going home worth it?What makes it worthwhile?
2. What is essential to make care at home work? 3. Imagine someone who coordinates home transitions.What job responsibilities would be most helpful? 4. Think back to waiting in the hospital before discharge home.What is useful to know while in the hospital?
The cards were designed by a communications designer with accessibility considerations in mind.The cards were large and highcontrast for those with limited vision and printed on cardstock for accessible handling. 39,40The cards were numbered to facilitate use during the workshop activities and emotive images were used to prompt discussion.See Figure 3 for the initial prompt cards and Figure 4 for the revised prompt cards, which were adapted using an iterative process as workshops were conducted.

| Analysis of codesign workshops
Workshop transcripts and notes were uploaded into Miro, 41 a program that facilitates collaboration between team members and visualization of themes using virtual sticky notes and text boxes. 34,42e team reviewed the transcripts and notes from each workshop together and organized the quotes into themes. 42Themes and ideas were clustered, forming areas for action. 31,42e research team created sketches and storyboards conceptualizing potential interventions, when the intervention might be used in the transition process, who would be involved in using or implementing the intervention, and how the intervention might provide a solution to the problems that were uncovered in the codesign workshops (see Supporting Information S1: Appendix A for examples of initial sketches).The research team met to discuss ideas, taking the design principles, patient and caregiver perspectives and system and process considerations into account.The design researcher and communications designer refined these ideas by combining elements into low-fidelity prototypes.

| Stage 3: Low-fidelity prototype testing
The low-fidelity prototypes were developed by the research team to display early ideation and testing of ideas (e.g., concept sketches, paper prototypes, storyboards). 43HCPs were included in low-fidelity prototype testing to explore the applications of the interventions developed from the codesign workshops.These prototypes precede high-fidelity prototypes, which are refined, and represent the look, feel and functionality of the final product (e.g., immersive roleplays, booklets). 43

| Recruitment
The RC sent an email to invite coinvestigators, home care staff and HCP codesign workshop participants to a low-fidelity prototype session.Coinvestigators forwarded the email to colleagues who coordinated discharge or cared for patients during the hospital-tohome transition.

| Data collection
The workshops were conducted virtually (Zoom) and were audio-and video-recorded to produce a transcript of the sessions.Participants were invited to workshops separate from their direct supervisors to encourage participants to speak freely.
Workshop participants were shown a PowerPoint presentation that gave an overview of four low-fidelity prototypes (see Figure 5) and the process used to synthesize prototypes from the codesign workshops.The design researcher led the workshops, encouraging participants to provide feedback on how these prototypes might fit into current scopes of practice, what interventions or parts thereof would be realistic to implement, and how the intervention could work in practice.

| Analysis of low-fidelity prototype feedback
The research team consolidated feedback on each prototype.Affinity mapping 34  provided are reassessed frequently to adjust to changing needs but often remain insufficient for patients and caregivers.
Finally, following stabilization in care postdischarge, caregivers experienced additional financial expenses when government-funded home care did not adequately meet patient needs.Thus, the incongruence between the expectation and the experience of going home was further highlighted, particularly when patients outlived their expected prognosis.

| Stage 2: Codesign workshops
Three patients and seven caregivers participated in eight workshops, and five HCPs participated in three workshops.
HCPs worked in the community and consisted of two physicians, two nurses and one nurse practitioner.Most of the HCPs also worked in an urban area (n = 4; 80%) and all preferred to speak English, although two were bilingual (English and French).The HCPs supported patients who lived in rural areas, Indigenous populations, Francophone populations, visible minorities, immigrant populations, refugee populations and people with lower income.Table 1 provides a summary of the participants in the codesign workshops.
Through working meetings, the research team identified key findings from the patient/caregiver and HCP codesign workshops including areas of need and areas of intervention.Areas of need were key issues and challenges identified and described by patients and caregivers.The areas of need were classified into four categories (emergency and health needs readiness, logistics of care set-up, psychosocial preparation and life at home) with subcategories (see summary in Table 2).
The research team then organized the key issues and challenges identified in the codesign workshops into common themes that could be addressed by codesigned interventions, identifying potential design directions.These were classified into three categories (codesigning a transition planning process, codesigning a capacity building process and codesigning a point of contact role) with subcategories (see summary in Table 3).
F I G U R E 5 Low-fidelity prototypes presented at low-fidelity prototype sessions consisting of checklist, quick reference sheets, patient/ caregiver workbook and transition navigator.Through working meetings, the research team identified areas of focus and considerations (see Table 4) for the concept sketches (Supporting Information S1: Appendix A).The design researcher and communications designer refined the ideas by combining elements into four low-fidelity prototypes (Figure 5) which included a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role.

| Stage 3: Low-fidelity prototype testing
Next, the research team held four low-fidelity prototype feedback sessions with a total of 20 HCPs.Eight participants worked in hospitals (40%), seven worked in the community (35%) and five worked across settings (25%).Most participants were PC physicians (n = 9; 45%), or worked in various home care roles (n = 6; 30%).
Table 1 provides a summary of the participants in the low-fidelity prototype sessions.
Participants provided feedback on each prototype (see Supporting Information S1: Appendix B for a summary).Overall, HCPs cautioned about information overload for patients and caregivers at a time where they are already receiving high volumes of information from their healthcare team.For example, a binder is supplied by home care providers on their initial visit to patients' homes and includes information for patients and caregivers.Participants suggested combining the low-fidelity prototype checklist, quick reference sheets or workbook into a single document.
Many participants raised questions about who would be assisting patients and caregivers in completing the proposed documents.As many HCPs are involved in patient care at different points during the transition process, there may need to be different HCPs involved to complete the checklist, quick reference sheets, or workbook.
Participants also suggested the need to clarify whether patients and caregivers would be responsible to complete certain sections, and where there would be space to add notes.Based on this feedback, the research team sorted the four prototypes along two sets of criteria, with the aim of visually understanding the level of facilitation that would be required for each.A 2 × 2 grid was developed with the vertical axis containing transition navigation-oriented versus reference prototypes and the horizontal axis depicting prototypes ranging in facilitation requirements from healthcare teams (see Figure 6).The goal was to visually understand the level of facilitation that would be required for each prototype.Therefore, transition navigators were categorized as navigation-oriented and requiring more facilitation; checklists as navigation-oriented and requiring less facilitation; patient/caregiver workbooks as reference documents requiring more facilitation; and quick reference sheets as reference documents requiring less facilitation.This exercise revealed the level of training that would be required for HCPs to be involved in testing and implementing the intervention, especially when considering navigation-oriented prototypes.

| DISCUSSION
By outlining the codesign and low-fidelity prototype process at this stage, we hope our findings can support researchers in early stages of codesign and prototype development.
Feedback from patients, caregivers and HCPs in codesign and low-fidelity prototyping workshops was that simple, targeted documents were best.The research team decided against advancing the transition navigator role for further testing as a high-fidelity prototype due to concerns from HCPs about its sustainability and challenges in overlap in scopes of practice with existing providers involved in the transition.Despite less favourable feedback HCP participants, this role may be beneficial when long-term funding is available for the role.
In line with previous research, our study demonstrated the value of codesign in improving healthcare processes.This study combined the perspectives of end users (i.e., patients and caregivers) in the hospital-to-home transition and perspectives of stakeholders who have the capacity to create change within the healthcare system.This approach enables alignment of the interventions with patients' and caregivers' needs to improve the experience of transitioning from hospital to home, generating beneficial solutions while working within the constraints of the healthcare system, 21,44 particularly with buy-in from HCPs and administrators. 22,27A B L E 1 (Continued) Where to source, and so forth.− Home was set up before discharge.− Easy access to emergency supplies and contact information, and knowing who to contact in specific emergencies (e.g., an emergency related to a health condition such as a seizure).

Feeling educated on patient-care procedures
− Feeling uneducated about patient care requirements once the patient is discharged home.
− Adequate education and hands-on demonstrations of patient-care tasks are needed to succeed.
T A B L E 3 Areas of intervention from codesign workshops.| 15 of 22 The amount of input that was sought from HCPs was higher than in most patient-centered processes.It was, however, important to engage HCPs at various points in the codesign process to tailor the interventions to a multifaceted healthcare system and ensure interventions' sustainability. 22,27,45This codesign process required a balance between occasionally competing viewpoints of the stakeholder groups involved.Taking a patient-and caregiver-centered design approach, the needs of all stakeholders can be met while mitigating competing perspectives. 46For example, there was incongruence between patient/caregiver and HCPs' feedback on using paper handouts for checklists, quick reference sheets or workbooks.During low-fidelity prototyping sessions, HCPs raised concerns about information overload; however, patients and caregivers in codesign workshops voiced that existing resources did not adequately meet their needs and desired more information documented in writing with physical copies provided.As previously highlighted, 44 HCP perspectives can often take precedence over those of patients and caregivers. 26,47We mitigated potential bias by ensuring that the voices of patients and caregivers were always at the forefront of discussions about intervention prototypes.
Many common elements of codesign were adjusted for this project.
While in many contexts, codesign involves designing with the community of 'end-users', 48,49  would realistically work with clinical workflow, and how to begin tailoring interventions to regional contexts.HCPs and administrators were consulted to ensure the intervention will be tailored to a multifaceted healthcare system, while ensuring patients and caregivers are at the centre of this process.This was demonstrated through the facilitation of online workshops ensuring functionally limited participants or participants with lower energy levels could participate.
Another strength of this study was the application of the Double Diamond Framework 32,33 to frame the phases of our process, 32,33 thereby demonstrating how to customize the well-established framework to fit the goals of a codesign project.

| Limitations
Two challenges experienced by the research team included recruitment of patients receiving a palliative approach to care and their caregivers and codesigning an intervention during COVID-19.
Due to low recruitment numbers, all eligible potential participants were accepted, rather than screening for a more diverse set of participants.This resulted in participants who were primarily White, English-speaking and of a higher socioeconomic status.Furthermore, the study did not note participants' education levels and literacy skills, which may impact one's preferences for receiving information.
From an equity-informed perspective, some patients and caregivers from marginalized groups may face additional barriers to participating due to low-income, limited English proficiency, or negative experiences with the healthcare system. 23,53,54Furthermore, the perspectives of the participants included in this study may not be fully representative of patient and caregiver needs, particularly of other ethnocultural and/or religious groups, and should not be generalized to all patients and caregivers.
Workshops were initially intended to be conducted in-person; however, during recruitment, in-person research was restricted due to COVID-19 and many participants preferred participating virtually.
The pandemic's shortage of community healthcare workers to The four prototypes presented in low-fidelity prototype workshops (checklists, quick reference sheets, workbook and transition navigators) organized into a 2 × 2 grid.
support patients and caregivers at home was also prevalent across patient, caregiver and HCP's experiences.Therefore, the COVID-19 pandemic may have impacted all stakeholders' experiences with hospital-to-home transitions.

| Next steps
We will complete codesign workshops and low-fidelity prototype testing at a second site, Bruyère Continuing Care in Ottawa, Ontario, Canada.The low-fidelity prototypes from both sites will be refined using the feedback from workshop participants and will be developed into high-fidelity prototypes.High-fidelity prototypes will be presented to patients, caregivers and HCPs at both sites to further improve intervention feasibility.The high-fidelity ACEPATH prototype will undergo an accessibility assessment using accessible design principles. 39,40 implementation study will then be conducted to evaluate acceptability, appropriateness, feasibility, costs and fidelity of ACEPATH.Next steps will thus address the Deliver-Implementation Phase through high-fidelity prototype testing and implementation testing.

| CONCLUSION
This paper provides a detailed process for codesigning key components of an intervention aimed at improving the hospital-to-home transition for patients receiving a palliative approach to care and their caregivers.The finalized ACEPATH intervention and the steps taken to refine it will be covered in a subsequent manuscript.This methodology demonstrates means of engaging patients and caregivers throughout the development of interventions, and HCPs in the intervention's fit within an evolving healthcare system.
MCCOY ET AL.|3 of 22       study design, such as clarifying that participation was voluntary, outlining steps to be taken if patients and caregivers became uncomfortable or distressed during the workshops and ensuring accessibility throughout the study.The core research team consisted of the health services researcher, PC physicians and nurses, the design researcher, the communications designer and research support staff.
was used to cluster notes into the following themes: what F I G U R E 3 Initial prompt cards used in codesign workshops.does the intervention look like?; what problem(s) is/are the intervention trying to solve?; and what are the concerns about the intervention?3 | RESULTS 3.1 | Stage 1: Development of codesign workshops Twelve participants completed the journey mapping exercise: five PC physicians (hospital or community), two nurse specialists or advanced practice nurses, two home care managers/directors and three patient/caregiver advisors.After reviewing the journey maps, the team highlighted three key moments during patients' hospital-to-home transition: (1) Waiting in the hospital for discharge; (2) the first 48 hours after transitioning home; (3) longer-term stabilization of care at home postdischarge.Participants highlighted the administrative load experienced by caregivers while patients were waiting in the hospital for discharge.Conversations occurred between the PC team, social workers, home care and additional community teams, but communication between team members and taking responsibility for different elements of the discharge were noted to be challenging.Caregivers reported experiencing an additional administrative load as they were often responsible for coordinating many of the physical supports (e.g., setting up equipment, obtaining medical supplies) before discharge home.When considering the first 48 hours after discharge home, the journey maps highlighted a dissonance between caregiver expectations and the actual experience of returning home.This included expectations around timelines for discharge, types of services available, frequency of contact or visits by HCPs and hours of home care support.For example, after returning home, caregivers subsequently realized that fewer personal support worker (PSW) hours would be provided than anticipated predischarge.Additionally, caregivers desired additional support by telephone in the period between discharge home and being contacted by home care coordinators or visited by a nurse or PSW.Notably, hours of care F I G U R E 4 Revised prompt cards used in codesign workshops.
The research team reviewed data from patient and caregiver workshops and established design principles to guide the development of low-fidelity prototypes.Five design principles were identified: (1) Equip patients and caregivers to live at home in a new way;(2) help patients and caregivers successfully navigate a new system of care at home; (3) utilize an intervention that involves having elements documented in writing (as opposed to a digital solution); (4) build capacity for patients and caregivers to manage the patient's deteriorating condition over time; and (5) equip patients and caregivers to succeed when supports are not sufficient.

Finally
, the transition navigator role was viewed less favourably in comparison to other prototypes.HCPs cautioned that the role contained overlapping scopes of practice with current care F I G U R E 5 (Continued) coordinators in the hospital and community.Additionally, HCPs were concerned about the long-term sustainability of the role when it is no longer financially supported by research project.

Getting home and setting up care at home −−−−
Don't have a home layout that works.− Don't know how to use what at home.− Equipment needs are a surprise and become an emergency.Adjusting the home layout so that it meets their needs.− Education sessions to know how to do what.− Know and prepare for what's needed.Medical care and protocol − How to administer all the needed medications.− How to manage the medications.− Is this medication plan going to meet my goals for coming home?Familiar with and capable of administering their medications.− Know all the operational issues of their medications.− Discussion, input and plan for medication that will address their goals.Psychosocial preparation Preparing for the unknown − What to expect.− Preparing for the trajectory.Learning caregiving basics − How to care for someone.− Basics of caring at home Managing change − How to manage change.− Make a game plan for care (if this happens, then what) How to cope − Coping when resources fall short.− Lack of communicated supports for caregivers.− Caregiver burden.− Interventions that help boost patient and caregiver morale.− Knowledge of and access to respite care.− Caregiver feels the ability to keep going (sustainable daily life) and has a variety of supports to help.Life at home Being prepared for emergency situations Feeling unprepared for future emergency situations.

1
Participant table-codesign workshops and low-fidelity prototype workshops.
Areas of need from codesign workshops.